504 Update

I'm very pleased to say that we now have a 504 Plan in place :D I met with everyone yesterday at 2:20pm and finished at 3:00pm. The meeting was with the Principal, Asst Principal, 2 teachers, the nurse and the guidance councelor. They used a check off sheet to determine if Kacey was eligible...of course she is! She met all 3 questions with a YES! Everyone was REALLY nice and very helpful. The nurse brought up several points that needed to be included and the Princial went along with all of it. Kacey's teacher did bring up one concern about her always getting a headache when she changed classes. She wasnt sure if it was really her blood sugars affecting her of if it was the stress of leaving her room. Kacey's gotten very attached to her teacher (so have I!) Her husband has T2 diabetes and Im not sure if Kacey feels safe and secure and knows that Mrs. M is going to take care of her the right way if something happens or if it is in fact her blood sugars rise and falls that are causing them? Whatever the case, it was noted on her 504 that she was having to miss class to test or because she was ill and that special accommidations needed to be made for her in those situations.

So in the end, I was VERY pleased we did this! Now it's in place and there are no questions as to what is expected of any of us. Kacey's Health Care Plan was also put with it. We will review this each year and make changes as needed.

On another note...Im pleased to note that Nurse J is finally comfortable with dosing and injections :) Kacey still calls me each day at lunch to make sure the dose is correct...but thats because she is being given the chance to practice figuring out her own dose...so thats a bonus! She did have her first "low" in weeks yesterday...she dropped to a 75 at snack time! Its a good thing we're still doing mid-morning snacks. Scary thing is...she never felt it physically. She asked her teacher to go test for snack and she went all the way to the nurse on her own and tested. So that worries me a bit...because she's not feeling those lows coming on.

Today is Homecoming for the high school! We were spose to go to the Homecoming Parade and then to the football game tonight but it will all depend on how Kacey is feeling as to what our plans are. Hopefully she'll start to feel better and we can go :)

~*~JILL~*~

Only Daddy's Side Will Do!

Kacey has always been a "Daddy's Girl"...from the time she was a toddler that followed him around like a baby duckling...til now when she wants to be right by his side with whatever he is doing. When she was a baby, she slept between us and finally at the age of 2, I kicked her out of our bed. During that time, is when she was having the febrile seizures and we were afraid to let her sleep in her own room so we kept the toddler bed in our room so we could hear her. Finally when she turned 3, I knew it was time for her to be in her own room! They told us that she probably would never have anymore seizures (she only had 2...but they were VERY scary!) So I moved her bed to her room, with much resistance from Daddy, but it worked :) When she would wake up, she'd come barreling into our room and get back in bed between us. But then we started to notice...days that she was sick...she wanted to be in our bed and particularly on "Daddy's side of the bed". It wasn't until she was old enough to tell me WHY that I really understood. One day when she was home sick from school I asked her why she always wanted to lay on Daddy's side of the bed when she felt bad? She replied with "Cuz the pillow smells like Daddy and I love him and I know you will lay next to me and take care of me like you do Daddy." Ahhhhhhhhhhhhhh! ~light bulb goes off~ LOL! So I explained to her I'd take care of her no matter where she was laying but if laying in "Daddy's spot" made her feel better then she could lay there as long as she wanted! So now, every single time shes sick...thats where she wants to be :) This morning she woke up, after a rough night, and she said she was sick at her stomach. Sugar check... 156. Hmmm ok... its not really high...but she woke up at 11pm with nightmares and I checked her at a 219. Could she have gone higher during the night and thats what made her feel sick? I guess Im going to just have to get used to doing 3am checks. Thats the only way I know to get those accurate results. So... guess where shes at? Yep... on Daddys side of the bed...watching cartoons and just feeling "miserable"! Diabetes is winning today and she's given in and just let it go. She's got a headache now so I'm not making her go to school today. We're just gonna take the day and rest :)

~*~JILL~*~

The Big Day...504 Meeting

Today I have my meeting for the 504 Plan for Kacey. I wrote the formal letter and sent copies to the Principal and Asst. Principal on Monday and within 30min of dropping them off, I got a call from the Asst Principal thanking me for my letter and telling me they were going to schedule a meeting THIS week! Well...that day has arrived :D I'm feeling a bit out of whack though. I know I have a case...I know she qualifies...but I have to go in with the Principal, Asst Principal, 2 of her teachers, the nurse and the Guidance Councelor. I have everything prepared and Ive written down some notes for those "just in case" moments that I draw a blank...lol! I'll be glad to get everything in writing though :) I just hope it goes smooth!

Update on the meeting to come later....

~*~JILL~*~

High, How Are You?

When I went into Kacey's room this morning and gently shook her to wake up, I knew she was going to be "Judy Moody". She turned and gave a grumble...which usually means its going to be a rough morning. She sat up in bed and said "I feel woozy!" .... What? Woozy? She's never used that term before! OK...Kacey, how does "woozy" feel? Mommy it feels like I cant get up. Hmmmm...so was she feeling light headed? Had she sat up too fast? So she gets up and stumbles to the potty and calls out for me. Mommmmmmmmmmm I really feel woozy! I grab the kit on my way to the bathroom. OK Lets test and see whats going on.....beep....beeeeeep..... 245! YIKES! She hasn't woke up with that high of a blood sugar since we were in the hospital!!! OK...so why was she woozy? Was she sick at her stomach because her sugar was high? Was she hungry and needing to eat? I dont know! I hate that I feel so helpless sometimes! So I got her dressed and she couldnt decide what she wanted for breakfast.

Me: Kacey you need to eat...what do you want me to make you?
Kacey: I dont know?
Me: Well I cant make that ... you need to tell me something! How about cereal?
Kacey: Cereal doesnt fill me up!
Me: OK...how about eggs & toast?
Kacey: No I dont feel like eating that.
Me: What about eggs in a tortilla?
Kacey: I dont want that either
Me: OK well you need to tell me something so I can get it done! Are you even hungry?
Kacey: YES Im hungry but I dont know what I want to eat!
Me: What about a cereal bar?
Kacey: No that doesnt fill me up either!
Me: OK then...how about you make your own breakfast then! Im tired of playing this game!
Kacey: ***huffs***

So I leave out of her room and go get dressed. I come back in and shes in the kitchen...getting ready to turn on the stove!!!!!!!! YIKES!!!!

Me: WHAT are you doing?
Kacey: You told me to make my own breakfast!
Me: I didnt tell you to use the stove!
Kacey: I need the stove to cook my eggs for breakfast!
Me: Well you need to tell me next time and you never use this stove without me in here!
Kacey: But Mom you SAID for me to make my own breakfast and I decided I want eggs!
Me: ***sigh***

LOL...ok so within 10 minutes she'd decided she wanted eggs and was going to cook them herself since thats what I told her to do....hahaha...how could I get mad at her? After all, I did tell her to make her own breakfast! So I ended up taking over for her...making her breakfast...got thru her shot and she's full and smiling and ready for school.

That still doesnt explain her morning high. She went to bed with a 146 and woke up at a 245...Im guessing we will see that Lantus increase when I fax her blood sugars in tomorrow! Am I selfish to pray she is thru her honeymoon? It's almost bitter-sweet. On one hand Im hoping she is because that means she can go on the pump and our lives can be back to normal....but on the other hand...is it selfish for me to pray for that because then it means the last of those cells that were kicking out insulin have been killed off and she is now totally dependant on the insulin to live a long and healthy life. Its a catch 22!

It's time for her to go to school.... more later :)

~*~JILL~*~

Air is the Problem....Vent is the Answer!

The power of the internet can be an amazing tool! We just had our first problem with the Humalog Kwik Pen. When Kacey first came home from the hospital we used the vials and used the syringes to draw up her insulin and once we were done with those we started on the kwik pens...which was much easier and Kacey really liked instead of the individual needles. Well we ran into 2 problems... the first one being...last month we wasted 180 units of insulin!! Because she is in school, we had to have an open pen at school and one at home. We used most of the one for home but because she was only getting insulin at lunch during school hours...it meant we lost all that insulin because its only good for 28 days after you open it!! Her dose was 1 unit per 30 carbs so she wasnt getting much insulin either! So that REALLY sucks! So I just opened 2 more pens...since its been 30 days...and when I went to prime the pen it wasnt shooting the insulin out. Hmmmm.... ok so I went online to trouble shoot...LOL you'd of thought I had a new electronic device in my hand! Well...it seems that the pen had too much air in it and I had to use a syringle and vent it...just like you would the bottle. Who'd of thought?!?! Once I got the air out then the pen started shooting out just fine!
As far as sugar numbers... her dose was changed last week and she is STILL running high. I cant seem to keep her in normal range and I thought for sure she'd drop since she was getting more insulin. So it made me think....wowww...if shes getting more insulin and she's still staying in the higher range...I wonder what in the world her numbers would be if she didn't have the insulin? Scary to think!!! I've also noticed...when she's active her sugar goes UP not down! She will shoot up to the 300's and then come down fast and get a headache. Also...as much as she loved plain Ramen noodles...she just can't eat them anymore because they send her sugar soaring high and then she gets sick at her stomach :( I did get her some new pasta to try this week and see if that works better for her :)

More later!

~*~JILL~*~

Poke Proof

Kacey's been saving her test strips to make pictures with them (gross to some yes...but worth it!) Every little strip is proof of a poke she's done. Poke...prick...fingerstick....each strip with it's own story of a low, normal or high blood sugar. These pictures are priceless! To some people these pictures may look like something a child created with little strips of paper...but they mean much more to us! They hold no value to anyone except those suffering with diabetes. Only they can know what each one of those strips means. It means... the joys of a normal blood sugar....the scare of a low blood sugar....and the worry of a high blood sugar. As a mom, I wouldn't take a million dollars for these pictures! To me, they are the pain my child deals with every single day....the struggle she goes through to get her blood sugars in normal range...and the hurt she feels with each one of those pokes into her tender skin.

House, Person & Sun (55 pokes)

Happy Halloween (minus the O) haha! (68 pokes)

btw.. thats a heart, smile face & skeleton

Yep this one speaks for itself! (50 pokes)

Freestyle Lite test meter....$50.00

300 test strips a month.... $15.00

1 used bloody test strip....useless

3 pictures made with 2wks of used test strips....PRICELESS!!

30....25.....20

I got a call yesterday afternoon from the CDE and they are changing Kacey's insulin to carb ratio ...again! She was just back down to 1 unit per 25 carbs and now they want her 1 unit per 20 carbs. Thats the ratio she was at when she was in the hospital 2 months ago. So what does this mean? Well...her body is needing more insulin for sure. So does this mean that its possible her honeymoon is ending? Yep quite possible! The only thing that scares me is...when she was on this insulin to carb ratio before she started getting tons of lows. I'd rather her be high than low...especially dealing with school!!

In reference to the 504 stuff....
I did do my formal letter to the principals. I'm sending that in on Monday and I got a friend of mine at JDRF to send me the School Toolkit so I had the info with the laws on it and then if I'm denied again I know what route to take :)

As for me...
I've got the cold that both girls got the last few weeks ~gives a miserable look~ Yep...we teach our kids to share...and mine decided to share their germs! LOL! Oh well! I'm "Super Mom" remember...and Super Moms cant be sick! :D So I will smile... and breathe thru my teeth since my nose is so stuffy that I cant breathe thru that and hopefully these meds will kick in soon and I can finally taste the crap Im trying to eat!

Tomorrow I am taking the girls to Howl-o-scream at Busch Gardens :) It should be a spook-tacular time! (Btw, Caitlin we're gonna miss seeing you dance)

Have a great weekend!
~*~JILL~*~

Super Mom knows best!

As a child I always remember hearing... "Listen to your mom, she knows best!" and I used to roll my eyes and tell myself I knew what I was doing.... pffffft! NOT! Now I'm sitting here realizing how true that statement really is!! Yesterday the CNP called me...yep the same one that told me she was going to ask Dr. R when we could start the pump... well she was calling to let me know she finally talked to Dr. R about it. Whoaaaaaaaaaaaaaaaa! ~pause~ I thought the CDE that called me on Fri told me NO PUMP til we're thru the honeymoon! ~play~ So she goes on to tell me that Dr. R said right now is a little premature to start her (duh! I knew that! Its only been 2 months) but he doesnt see why we cant start thinking about pump classes when she sees him in January. AHHHHHHHHHHHHH! Thats wonderful news!!! I told her what the CDE said and how she basically told me I was wrong for doing my research now. She said that I was RIGHT in being proactive and that is exactly what Dr. R likes to see because that shows him we're gonna manage Kacey's diabetes as best as we can. Whew! Ok...so a little light lit back up inside me and I felt like I saw some hope again :D Yay!! So then I told her about the 400's we got and how scary they were. We weren't faxing weekly blood sugars til today but I thought maybe she wasnt getting enough insulin for the carbs she was eating. So I asked for her permission to lower the insulin to carb ratio... back to 1:20... she said that since Kacey dropped so much on that dose that she would do it 1:25 and see how she does :) and then she told me I was doing a great job seeing those signs and trying to tweak things already. (puts Super Mom cape back on and ties it around my neck) I felt that boost in confidence again! So last night her numbers were 123....134....143 ...wooohoooooo how's that for GREAT numbers?!?! She woke up this morning at a 156!!! So Im pleased with myself for speaking up and saying something!

Its gonna be a good day :)

Ohhhh and yesterday Kayleigh won her hockey game again! ... 5-1 !!! So that means they are still UNDEFEATED!!! Im so happy for her :) Only 2 more games til the playoffs :D

Until later...
~*~JILL~*~